A roller-coastery week and why I KNOW we made the right choice

It's been quite a week.

I have a cold or a virus of some sort for one thing.  I haven't been sleeping well for another.  That makes the head space of Val a difficult thing to navigate.

We had the fantastic news (mentioned below in an earlier post) from NIH this week that encouraged me immensely.  After that I didn't expect to be thrown for any sort of loop at my OB appointment on Wednesday.  After all, I had a game plan and I was on top of everything.

But there was this other bump that I'd been stressing over.  The one on my belly.  I presume it is this bump and it's odd location that makes people exclaim, "Oh My, You're just HUGE!!!!" upon seeing me these days--which believe me is a great ego booster for a girl, especially when those same people try to convince me I'm  having twins or that my due date is off by two months. 

And that bump, as I mentioned yesterday, it turns out is most likely a hernia.  And my doctor thinks that most likely that hernia will need to be dealt with surgically post baby arrival.  And that news...  That news did not please me any.

I looked at Andy after sobbing hysterically in the Goobermobile for a few minutes after the appointment and said, "I can take the news of a Carotid Paraganglioma and go off to work.  Here I am crying over a hernia?" 

But really, first of all, hernias sound like something that only hairy, large men with names like Bif and large biceps should get--at least in my head.  And second of all... 

Um...  Have you been paying attention to what's going on ALREADY after this sweet little girl makes her appearance in our lives?  Things will be quite full enough thank you and I'm not really in the mood to 'squeeze in just one more tiny surgery' no matter how 'routine' it may be.

So there was that.

And then, my doctor mentioned that the anesthesiologist wanted to see me.  I've given birth at this very Naval hospital two other times before this pregnancy and not once has an anesthesiologist wanted to talk to me.  In fact, since my labors happen mainly within the 'it doesn't really count as REAL labor according to the intake nurses' window of being dilated to 2 cms for 6-8 (painful, contraction-filled) hours and then going from hearing 'you're never going to have this baby at this rate, woman, deal with it,' from the nurses to 'Holy cow it's time RIGHT NOW!!!  Somebody put on the Catcher's Gear!" in the course of a few minutes, I've never even had time for an epidural.

But this time an anesthesiologist consult was requested.  So I asked why and I was told that it's because I have a weird thing in my neck and they wanted to talk to me about what that might mean with anesthesia. 

I was shuffled around on this particular consultation two days in a row.  In the meantime I talked to the amazing people on my team at NIH to find out what my anesthesiologists DID need to know.  That boiled down to one thing really:  It is really, really, really, really, really extremely unlikely that this Para (or another one that we don't know about) would secrete hormones and spike my BP especially given my catecholamine/metanepherine levels being normal and my blood pressure being a little on the low side even with all the crazy that's happened lately.  BUT it's not unheard of.  Sometimes the stress of labor triggers an otherwise 'silent' para into action and when that happens a hypertensive crisis could happen.  So...  There was just that one little thing they needed to know, really.

After being led through a maze to find the anesthesiologist's office at the Naval Hospital today (which was...  strangely in the middle of the dental wing???), and after waiting for him for 15 minutes in a hospital that was mostly deserted because of meetings, and after speaking to 3 different people wondering where he was and then waiting on him to come shuffling in, I finally got to sit down and talk to the guy.  He was worried about blood flow and about my airway, which are valid concerns for a gentleman of his profession.  When I used the word 'paraganglioma' he said, "Do you have documentation of this diagnosis?"  And I said, "Um...  Yeah."  He yelled at me for not having a specialist following my case more closely and I told him that no specialist wanted me until after my baby was born.  And then I brought up the issues that my folks at NIH had indicated were most valid to address.  He grilled me on my cat/met levels and noted my low and stable blood pressure so far and made a 'what is with this weirdo patient worrying about things that aren't going to happen?' facial expression that I'm coming to know quite well.  Then he said "If you ended up having a hypertensive crisis we could give you drugs to make you stable and transport you to another hospital more equipped for those things, but I think you'll be ok delivering here."  Translation:  In the (admittedly extremely unlikely, but not unheard of) event that the stuff hit the fan...  I'd be toast.  And this guy didn't really care.

So I came home.  And I cried.  And I sent an email to NIH. 

And NIH called back straight away and said, "You know...  You really need to deliver at another hospital," and I blubbered something about how they probably couldn't refer me out because I haven't been SEEN by someone who would recommend it given my diagnosis...  And the wonderful nurse who has begun calling me 'honey-bunny' from all of the conversations we've had in a way that doesn't even really annoy  me, said, "WHO DO I NEED TO TALK TO?"  And I cried.  And felt better.  Because SOMEONE has my back.

I have really been hating being a rarity lately.  I hate that when I talk to a doctor here in this state--even the super-specialists at places like UW--I am thought to be a hypochondriac zebra-chaser.  I hate that within about ten minutes of talking to some of the doctors I've encountered that I can tell that they are not clear with the terminology.  For instance a "Carotid Body Tumor, (which is actually a misnomer) IS a paraganglioma.  And a Paraganglioma IS very similar to a Pheochromacytoma.  It's the same thing, but located outside of the adrenal gland.  I don't WANT to be the expert.  I know very well that I haven't gone to med school.  But because of that fact most of them blow off any information that I give them because after all 'they're the ones making the big bucks.'  It's enough to make a girl feel completely, and totally alone with a diagnosis that is treatable but serious and has the potential to be very serious not only to me, but possibly to my children also. depending on what we find out about the genetic nature of the disease. 

And that is why I am so INCREDIBLY THANKFUL for NIH and for the communication that they have been so free with and for their answering my questions and NOW being willing to talk to whoever needs to be talked to to make sure that until I come to THEM that I am seen by the best people possible.

So what's that mean on the news front? 

It means that...  Well, I have a hernia too.  It means that there is a good possibility that I will not be delivering at this hospital.  It means that we have about 8 weeks to figure out where I'm going to give birth and it means that I may be saying goodbye to the only doctor in this part of the country who has taken me seriously and advocated for me and not treated me like a zebra chaser:  The Family Practice Doc. who has been following my OB care. 

It means there may be a battle for a referral with TriCare, but I have faith that my person at NIH will get the right information to the right people to get me to the right place

But hopefully, ultimately it means that all will be well for the part of this deal that is supposed to be joyous and that is supposed to be about the arrival of the sweet little person growing and kicking and wriggling within me as we speak.  If that part of the puzzle can be put in and put at rest, we can focus on that for the next few weeks and get into the joy part of it all before heading to NIH and dealing with the tumor part of it all.

I'm still a coldy, tired, and emotionally frazzled girl.  But I AM going to be ok.